I love the title of this essay and have been waiting for years to use it. I always say this will be the title of my book, if I ever get around to writing one.
My disabled son will be going to sleep-away camp for two weeks soon, where he has gone for many years. The camp specializes in caring for kids with chronic illnesses.
This Sunday, a week before he leaves, I am travelling to Israel on a women’s trip. You must be desperate, you may think. Or crazy. Who goes on a trip to Israel in the middle of turmoil? I am. This trip has been planned for months and I feel strongly that I need and want to go.
And yes, it gives me an extra week of respite from my child with special needs.
I don’t really feel as desperate these days as when my son was younger. His health is stable as of late, so it’s his day-to-day care that becomes part of my daily grind.
Unlike typical people who graze when their stomachs tell them they’re hungry, I have to remind my son to “feed himself” 5-6 times a day with formula through his feeding tube. He can do this independently. He is typical in that his face is generally glued to some sort of screen or device, so asking him to attend to this task progresses quickly from the nice, calm request of “Ben, please come feed yourself” to “Ben, come feed yourself NOW!!” It exponentially increases my shrew quotient.
Add the medication three times per day, and it’s a carefully orchestrated care plan that has become somewhat rote for me. The trickiest time to medicate him is at 4:30 a.m. Unfortunately, the sleep-to-wake autonomic process can cause my son to have one of his “crisis” episodes. The medication eases this transition so he can awaken and have a good day. If I oversleep or set my alarm incorrectly, things go downhill very quickly. My husband and I share much of our son’s care. I do the early morning medications and he does the last feeding before bedtime (when I’m usually asleep.) It works for us.
When we had our first child, I became aware of the constant competition between my husband and I about who was more tired.
“I’m so tired,” I’d say.
“No, I’m so tired,” he’d reply.
We agreed to acknowledge we are both exhausted and to just be kind to each other. Being tired is a state of adulthood. Whining about it doesn’t make it any better. Either get some sleep or stop talking about it.
So I don’t complain about the early morning medication. As long as it keeps my son functioning and happy, it’s okay with me. I appreciate the occasional break when I can allow my body to wake up at it’s natural time. Or an afternoon nap.
I will definitely welcome the separation. Even if my respite includes an occasional air raid siren or bomb shelter visit, it is a different stress and hardship from my daily life but one the Israelis know well.
Desperate for respite – from my home to the Middle East – it’s something everyone yearns for.